“Ask the Doc” – Sun Protection Tricks & Tips for Summer 2023
With summer underway, we are honored to share our latest “Ask the Doc” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, and Kalyani Marathe, MD, MPH of Cincinnati Children’s Hospital, share the importance of sun protection for JM patients.
Sun Protection Tips & Tricks: What Parents, Grandparents, and Patients Need to Know
Ask The Doc: Why Exercise and Nutrition Are Important In JM
We are honored to share this insightful presentation and Q&A on the importance of exercise and nutrition in treating juvenile myositis with Dr. Brian Feldman of The Hospital for Sick Children and the Cure JM Clinical Care Network.
What role does exercise and nutrition play in JM treatment? When should JM patients be cleared for exercise? What effects do exercise and nutrition have on disease outcomes?
Story of Hope – Weiss Family
Emma’s story began in the early summer of 2022. As we had been spending time with her and her family, we noticed, along with her parents, Emma was not her vivacious and energetic self. Concerns for her health mounted over the summer, and her parents began to search for answers. In the beginning, their concerns […]
Join Cure JM Foundation for a Virtual Symposium
Juvenile Dermatomyositis: Advances in Basic Research, Translational Studies and Clinical Care May 13, 2023, at 10:00 a.m. EST 3.0 CME credits are available through Duke University Session 1 10:00 – 10:10: Opening Comments and Introduction. Nikki Hahn (Chair, Cure JM Foundation Board of Directors), Andrew Heaton Ph.D. (CSO, Cure JM Foundation) 10:10 – 10:35: Sarah […]
Kim: A Grandparent’s Story of Hope
My 7-year-old granddaughter, Emma, showed signs something was wrong at a family wedding in June 2022. Her normal bouncy, and energetic antics had given way to being overly tired and complaining that her legs kept falling asleep. Only a few weeks later, while on vacation in a small town in Eastern Washington State, Emma couldn’t […]
Abatacept Trial Concludes With Favorable Results In JM Treatment
A clinical trial treating patients with juvenile myositis with the drug abatacept resulted in lower disease activity and clinically significant responses in most patients. The trial was conducted at the Cure JM Center of Excellence at George Washington University, and preliminary results were presented at the Global Conference on Myositis. Abatacept was generally well tolerated […]
Cure JM Research Consortium Receives Prestigious Chan Zuckerberg Grant
The Chan Zuckerberg Initiative has awarded Cure JM and a consortium of Cure JM-funded researchers a coveted $2 million rare disease research grant to identify new biomarkers in JM and improve precise, personalized care through the identification of cell-to-cell interactions that drive inflammation in juvenile myositis.
Cure JM’s 20th Year Opens With the Promise of Four New Research Grants
Research Grants: New Grantees and Exciting Updates From Existing Grant Recipients This year saw a very strong field of grant applications across a variety of JDM research projects. Again, we saw applications spanning the globe, recognition of the Cure JM Foundation’s preeminence in JM research, and global reach. There is a robust process to rank […]
Parent Ambassadors for Cure JM’s Giving Tuesday Holiday Challenge
Your Participation Means a Lot to Our Success We are pleased to recognize our Parent Ambassadors for Cure JM’s Giving Tuesday Holiday Challenge. The Parent Ambassadors have stepped into a leadership role to help make the biggest day of the year a huge success for our kids. We are so grateful to all our ambassadors […]
Welcome to the 14th Annual Cure JM National Family Conference and Walk Strong to Cure JM®, Washington, DC
Thursday, June 29–Sunday, July 2, 2023 • Washington, DC Conference activities begin at 9:00 a.m. on Friday, June 30, and run through 12:00 p.m. on Sunday, July 2, 2023. All conference activities, including Sunday morning’s walk, will be held at the Gaithersburg Marriott Washingtonian Center at 9751 Washingtonian Boulevard, Gaithersburg, MD 20878. Families who book […]
IVIG: What Families Need to Know
Learn about IVIG (immunoglobulin therapy administered by vein). This session features Dr. Fatma Dedeoglu of Boston Children’s Hospital, Huub Kreuwel PhD, of Octapharma Plasma, and patient advocate, Michelle Vogel, of CSI Pharmacy.
Nutrition and Exercise
How to apply the nutrition and exercise recommendations sometimes provided by healthcare providers and make them work for your family in the “real world.”
Sample Medication Chart
The number of medications used to manage juvenile myositis and its side effects can be overwhelming. Cure JM developed this sample medication chart to help you stay organized.
Child’s Checklist for Doctor Visits
One of the ways you can help your children cope with juvenile myositis is by giving them a sense of control over their doctor visits and treatments.
Randy: A Grandparent’s Story of Hope
Over ten years ago—in the spring of 2012—Brynn’s parents, Matt and Carrie, noticed a change in their daughter. Brynn had seemed like her normal four-year-old self while with her grandparents for Easter. But by May, something was different. “Our daughter, Carrie, and her husband Matt noticed that Brynn was not her active self,” says Randy, […]
Meet the Kania Family: Giving Tuesday Co-Chairs
Leah and PJ are parents to four-year-old daughter Olivia, who has been bravely fighting JM for almost two years. Together, they lead Cure JM’s annual Giving Tuesday Fundraiser. At the beginning of treatment, Leah and PJ felt helpless in easing Olivia’s pain—so they channeled their efforts into Cure JM.
Grandparent Council (GPC) Meeting Recap • May 25, 2023
Meeting notes are posted on the Grandparent Council Bookshelf. Next Meeting: Date June 22 2023 at 3 pm EDT/2 pm CDT/1 pm MDT/12 pm PDT The March Grandparents Council (GPC) meeting was held on May 25, 2023, at 3 pm EDT. These meeting notes will be posted in the Grandparent Council Bookshelf on google docs, along with previous […]
Cincinnati Children’s Hospital Upcoming Events
JOIN US! Two Upcoming Events for Juvenile Dermatomyositis Families & Patients Online Town Hall Friday June 2nd 1:00 p.m. Eastern Sun Protection Tips & Tricks for Summer PRESENTED BY Sheila Angeles-Han MD, MSc Physician, Division of Rheumatology Cincinnati Children’s Hospital Medical Center Kalyani S. Marathe, MD, MPH Division Director of Dermatology Cincinnati Children’s Hospital Medical […]